Unit Manager

Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting Aim. The aim of this research was to identify the needs and coping strategies of individuals with Huntington disease and their family members/carers and to ascertain the extent to which they were supported by the type of specialised service provided in this unit. Background. The duration of the illness may be up to 30 years and there are far reaching implications for the affected person, family members and carers. Services for families need to provide expert psychological and practical support, whilst remaining planned and flexible. The aim of this research was to identify needs and coping strategies of individuals with Huntington disease and their carers and ascertain the extent to which they were supported by a specialised community service. Methods. Five focus groups and three individual interviews were used to gather data from affected individuals, family, carers and staff of the unit (n = 33). A semi